Monday, 21 February 2011

Nearly, but not there yet ...

Today we moved Adam out of an individual room and into a shared bay. All of his IV infusions have been stopped and providing his blood counts remain stable we expect him to be discharged later this week. He has a long way to go to recover his appetite to where it was when we arrived at the hospital 22 days ago, but he is at least eating regularly and his fluid intake is perfectly fine. Aside from a couple of tablets - Ursodeoxycholic acid (for his liver) and Sando-K (potassium) - he is on no other medication. If this proves to be it as far as high-dose is concerned we've had a massive result. Sure the sickness and diarrhoea was unpleasant, the mucositis burning holes in his throat was horribly painful, the rash from the reaction to antibiotics looked hideous, and the weight loss from lack of eating was not nice to witness. But trust me, none of these were very serious in the big scheme of things.

Of course we've got to remember that we didn't put Adam through all this just to see how well he'd cope with it. Whether or not the high-dose chemotherapy has done anything to ease Adam's disease burden remains to be seen. I don't happen to believe it will, but what I do hope is that it will have killed off Neuroblastoma cells lurking elsewhere that are not visible on the scans; cells which if not destroyed would go on to cause relapse in other areas.

As we come out of high-dose the big question now will be what to do next. It's very likely that whatever it is, unless we do a 3rd MIBG therapy, we won't be doing it in the UK.

Incoming text message from Alison as I type ... "Adam temperature 38.1°C." What was I saying about Adam being discharged later this week? If he spikes a fever he'll be back on the antibiotics and they'll be taking  another blood culture to see if he's got another infection (a process, as I mentioned before, that takes at least 48 hours).

Whilst Adam's temperature remained elevated during the evening it stayed just below 38°, and therefore no action was taken. He managed to venture into the playroom for the first time in two weeks and spent an hour or so playing happily with Jessica. The bay he is in now is much warmer than his room was. We've changed him into short pyjamas, put him to bed, and crossed our fingers that his temperature normalises again overnight ...

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